- Hans Weberling
- Bakersfield, CA, United States
- Hans was a busy, happy, sweet and fearless three year old when he was diagnosed with Neuroblastoma. He fought his disease like a "gladiator" for nearly 6 years. Hans was an animal lover to his core. He was 'guarded' at home by his three cats, Black, Orange and Cotton. He also had his Golden Retriever, Honey, to keep him company. Hans enjoyed swimming, biking, gardening, grilling (he had his very own grill!), horseback riding, playing video games, building Legos, and flipping between Nickelodeon, Cartoon Network and Animal Planet. Hans loved all members of his family and he was a loyal friend. He had to go through a lot of treatment in his life. But Hans powered through it. His attitude was let's get this done! His motivation was always to get back home, to his family, pets, favorite foods and pool.
Tuesday, January 10, 2012
Going to San Francisco
We just got news that Hans will be admitted at UCSF for MIBG therapy tomorrow.
At present, I'm a real disaster. We've been put through a horrible emotional ringer the past 24 hours.
- at first we were under the impression that we made counts to go
- we were then told Hans was excluded due to his platelets (Which were 83 yesterday)
We were desperately confused as we'd been told that Hans had to have Platelets of 20. Hans said, "Do they need to hire me to do their math for them? I made counts by 63!" I guess they didn't like a downward trend and wanted Hans' platelets to be "his own".
-UCSF suggested hans get MIBG therapy there on 1/26/12
- Our doc is currently in India - she was pleading via email, along with the rest of our CHLA team, to take Hans NOW.
- CHOP was put on call. We were looking into an MIBG opening there next week as an alternate.
-Hans went in for a re-check of labs today and his platelets came back at 72.
- The UCSF team reconsidered and we werejust told we could be taken.
- At one point in the past 24 hours we were told IF we went, it'd be on Friday, not Thursday.
- We were just told to be here at 10 tomorrow for intake.
My nerves are shot. We've been through a really unpleasant emotional experience. We've lost a day of planning and packing. We've lost a hold on whatever emotional grip on reality we had. But now we've gotta scoop ourselves up and hit the road in the morning with the conviction that it has to be the best choice. I know I'll shake off all this negative energy but I also know it'll take a while. It's hard not to be able to tell Hans what to expect. Now he's upset that we're back to the plan of leaving early Weds when we'd all been told we got an extra day.
I just talked to the NP and she has ativan orders on board to keep Hans relaxed.
I'll update you from SF. Maybe this will be one of those surprises and the worst of it is just getting there??? Please pray for this MIBG therapy to reduce or erase Hans' disease burden!